Health News 2001

“Chemobrain?! What are you
talking about?!”

Complementary
Corner

Deborah
McTaggart, R.N. Ph.D.,

Winter 2001

The
title describes a woman’s reaction to being told by another
survivor that problems she was experiencing with memory and
concentration over the past two years happened to a lot of other
women after chemotherapy. And there was a word for it “chemobrain.”
Exclamation points in the title capture her surprise and confusion
at hearing the term, and in learning she was not alone. Her words
also echo my initial reaction to the term “chemobrain” because
it is not one that comes up in the psychological literature on
breast cancer.

What exactly are we talking about here? Research information is
sparse, though the phenomenon of chemobrain is nothing new to many
survivors. At present, there are no studies on chemobrain as a
real life phenomenon experienced by women. However, a small but
growing number of studies focused on measuring cognitive deficits
after chemotherapy, which would include a variety of thinking and
memory problems, do point to the need for further study.

Let me try to sketch some answers to three overlapping questions.
What is known so far about cognitive changes after chemotherapy
for breast cancer? How many women are affected? What difference do
these cognitive changes make, if any, in daily living?

Research interest in the cognitive impact in women treated with
chemotherapy for breast cancer is growing partly because of
concerns for the large number of women who may be affected – and
affected for a considerable length of time. Some research suggests
that perhaps 25% of women may experience “significant”
cognitive difficulties that may last up to ten years. At present,
there is limited evidence that test scores for a percentage of
women treated with chemotherapy are significantly lower than those
of a comparison group, particularly on measures of memory and
concentration. Effects on cognitive functioning also appear to be
related to the intensity of therapy, such as the amount of drugs
taken, but not to other factors such as anxiety, depression, or
fatigue. It is worth noting that women who score significantly
lower on tests might still have scores that fall within what is
considered a normal range of test results. As a clinician, the
question that is of most interest: What does all this mean in
terms of the day-to-day life of women?
One of the problems with current research is that is it is very
much focused on test scores. Even if results happen to fall within
normal range, and so could be seen as non-significant, the impact
on a particular woman could still be highly significant in her
eyes. For example, a woman who prided herself on having an
excellent memory might score within the normal range on testing
but be having a lot of difficulty in her daily life. Listen to how
another survivor in my study described the impact on her life.
“I used to have a really good memory. My memory was excellent.
But now I can’t remember important appointments at work, even
when I make them for the same day. I have to write everything
down.”

My particular research and clinical interests lie in this area –
understanding how women define and experience chemobrain, as
opposed to measuring cognitive function with a battery of
psychological tests. The issue is relevant for women in terms of
making informed decisions about their treatment, for their career
and educational goals, for general quality of life, and for
counseling and support services for women and their families. In
my research, one of the few areas of conflict that developed
between mothers and daughters about mom’s breast cancer centered
on disagreements about permission being granted for a daughter’s
activities outside the home that were later not remembered by mom.

To develop a better understanding about the nature and impact of
chemobrain in the lives of survivors, the BC Cancer Agency, Fraser
Valley Centre has initiated a research project. Our hope is that
we can come to a better understanding of chemobrain as a real life
experience for women that will be of direct benefit to them and to
those who care for them. Women who think they may have experienced
chemobrain, or are still experiencing chemobrain, and have
completed chemotherapy approximately 6 months ago are being
invited to participate in an interview study where they can
describe their experience.

Note

If you experience symptoms of chemobrain, I strongly encourage you to talk with your health care professional about your specific medical condition and treatments. The information contained in this website is meant to be helpful and educational, but is not a substitute for medical advice.

If you feel your medical team is not informed or supportive about chemobrain I urge you to refer them to this web site or seek out a provider among those listed who are actively engaged in the research and writing on this complex matter.